A Woman's Journey With Rare Disease

Important Food For Thought

I really like this article. It’s written in a very straightforward & heartfelt but direct manner.

I admit I’ve had to let people go or stop communicating with them in both support groups & in personal relationships when such issues have come up & they’ve crossed a similar line with their “concern.”

The reason for this too is not just the unsolicited advice, but the true lack of support & understanding over what I “should or shouldn’t be doing” when it comes to dealing with my rare diseases. It includes passing judgements on decisions I’ve made for myself after seeking proper treatment & advisement from professionals.

Even though the author clearly uses cancer as the example because that’s the experience & disease journey that was shared between he & his sister, this also resonates with many disabilities, chronic illnesses, & rare diseases equally I think, which is why I’m sharing it.

It’s just good to keep in mind to truly support any friend or family member who is going through something very heavy & serious.